The Unbearable Sensation of Being: Living With SPD

[auntie]

www.ucsf.edu/news/2018/06/410786/living-with-sensory-processing-disorder?platform=hootsuite



The Unbearable Sensation of Being: Living With Sensory Processing Disorder



Some Kids Find Everyday Stimuli Excruciating, And Scientists Are Finally Figuring Out Why

[sahara78]

Thanks for sharing. DD likes to sink underwater in pools, as was mentioned in the article. It never occurred to me that it’s likely sensory driven.

[jackaroe]

Thank you for sharing this. We got ds's offical asd diagnosis this past week , along with spd and high anxiety. Some of the experiences in this article really hit home.

[funchicken]

I'm glad to see that SPD is getting more attention. DD1 was diagnosed with SPD by an OT when she was 4, but the doctors just kind of blew it off or told us she'd outgrow it.

[akafred]

I’m also glad to see SPD get some serious attention. It really is a “thing” that can disrupt children’s lives, especially in the early years. And it is not just an autism thing.

Anyway, I am very curious how real scientific studies will find newer treatment like biofeedback and neurofeedback. Right now it’s unproven so... who knows? Plus insurance issues. We could actually get neurofeedback on DD’s Medicaid insurance, BUT there is only one practitioner is in network and they are 150 miles away. When I talked to the insurance company they said that they do offer a van as transportation since it is >50 miles. I said, yeah, but you do it 2 or 3 times a week. She’d have to drop out of school! Not planning to do it without insurance. And some scientific studies would be nice...

[mightymaude]

I wish more people understood this. Both of my children are highly sensitive to stimuli and even relatives don't get it and think they just need to suck it up.

DS thinks anyone yelling is also yelling at him. He can only comb his hair one way because anything else is excruciating. Never ruffle his hair b/c he will collapse. I have bought his shoes in the next three sizes because it took four full days of looking for him to find a pair that didn't hurt his feet in some way. He suffers through non-soft pants only because I only buy him two pairs of exercise oants and he isn't allowed to re-wear. DD cannot handle anyone or anything outside of typical boundaries. Adults in costumes or acting erratically or too enthusiastically, crowds, noises, smells, wind... She is only better with clothes because she is too skinny to go without adjustable waists.

[jackaroe]

Oct 3, 2018 19:13:41 GMT -5 mightymaude said:

I wish more people understood this. Both of my children are highly sensitive to stimuli and even relatives don't get it and think they just need to suck it up.

DS thinks anyone yelling is also yelling at him. He can only comb his hair one way because anything else is excruciating. Never ruffle his hair b/c he will collapse. I have bought his shoes in the next three sizes because it took four full days of looking for him to find a pair that didn't hurt his feet in some way. He suffers through non-soft pants only because I only buy him two pairs of exercise oants and he isn't allowed to re-wear. DD cannot handle anyone or anything outside of typical boundaries. Adults in costumes or acting erratically or too enthusiastically, crowds, noises, smells, wind... She is only better with clothes because she is too skinny to go without adjustable waists.

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I wish more people understood this as well. There are so many little things that effect ds and even with explaining and warning to family they still try to interact with him their way. As a result we have had to severely limit time with them, I honestly am ok with this.